RECOVERY STORY: KALE
Kale’s Journey
Presented By Generation Rescue
My name is Tamra and I live in Biloxi, Ms.
My son, Kale, was diagnosed at the age of two with Autism Spectrum Disorder, Sensory Integration Disorder, and ADHD tendencies. The child phyc. we took him to actually called me on the phone and said "I guess you have figured out by now that Kale has Autism". I almost fell out. I had no idea that was going to be the outcome.
So, like most of us, I cried, got angry, and then got busy seeing what hope there was to cling to. Unfortunately, in this part of the country, there is not much in the way of services for our special children. So we started early intervention and every therapy we could get him into. Yes, it did help to a point.
But the real help came one night at about 10:30 pm while I was online researching ASD. I came across Generation Rescue. Let me just say I was skeptical, but desperate. Kale had come to a stand still. He was having serious problems in school and could barely sit to focus. The same doctor that told me Kale had ASD would not give us an actual diagnosis on paper, he said Kale was too young to label. So we had to go to a children’s hospital in Louisiana to get our diagnosis so that we could receive therapy through the state. The doctor that wouldn't give us the diagnosis was happy to prescribe Kale all kind of drugs. At different times he was on Focalin, Adderall, and several other drugs to help him focus. What we had was a zombie that had no appetite and couldn't sleep. He would bang his head and wrestle with himself to fall asleep and many times it required one of us to lay on him so that he could calm down to sleep.
When I told the doctor that Kale looked sick and hadn't been eating for several months as well as sleeping, his response was to give Kale sleeping pills. I had had enough, no more drugs!! We have not seen him since.
So, my next move was to follow the steps lined up on generation rescue. My husband thought I was crazy, but no one was helping us! First I started the GF/CF diet. The teacher in Kale's SPED class told me that I was wasting my time and that many of the other children had tried that diet and it made no difference. I sat in my car and cried. I had to try it.
Let’s just say that one month later that same teacher met me at the car and asked me what I was doing with Kale. He was sitting in circle time and actually listening to her. Not to mention he was finally eating. The dark circles had disappeared from under his eyes and he was beginning to look healthy. He eventually started to verbalize more and the therapists were getting more from him as well. All of this from a diet? I was hooked.
Next was to find a rescue angle for support and a DAN! doctor for treatment. My rescue angle is a beautiful person and since then we have been able to help each other several times. The DAN! doctor I used was Dr. Julie Buckley in Ponte Verda Florida. We have one a lot closer but something drew me to her (it was God of course) and I really felt a connection to her as she had recovered her own child.
My husband decided that the less he knew about all this the better off he was, but he did help when I asked for it. So we went on a 10 hour car ride to the Dan! doctor. For the first time ever I was told positive thing were in our future. She said she wanted to spend her retirement going to all the weddings and graduations of her patients. I LOVE THIS LADY. Finally I had hope.
So, we started on a ton of supplements to help replace the nutrients that Kale's body was lacking. We started to chelate to get out the heavy metals that he tested positive for. And we scheduled a rigorous two months of HBOT in Florida over the summer. Let me just add that after the first HBOT treatment, Kale asked me to pull over so he could go to the bathroom!!!! From there he was potty trained!! Finally at the age of four he did it.
This is just our condensed story, there is much more to it. But without generation rescue Kale would not be where he is today. These treatments work. Yes, some of them are costly, but it is doable. We do not make a lot of money, but God has made sure to give us what we need to make Kale better.
Do not take a regular pediatricians word that there isn't much you can do for your child. There are tons of things that can and do help our kids. Each child is different, therefore, the treatment for each child may be a little different, but they can be recovered.
It takes time and hard work on your part as the parent, but it is so worth it. I have told Kale I loved him twenty times a day since the day he was born. But I will never for get the day he looked me straight in the eyes and said "I love you too mommy". It still gives me chills. Both of my kids’ births were incredibly special days in my life, but that day I have to say was the best.
Kale has a short recovery video on You Tube. It’s just a little piece of proof. Good luck and don't give up! This and other stories of recovery can be found on the TESTIMONIALS page at GenerationRescue.
I think in a lot of cases it is hard to get a diagnosis because doctors see autism (even high-functioning) as such a hopeless diagnosis and they just don't have the guts to tell it to you straight. They'd rather pass you on down the line and hope that someone else has to give you the news.
That at least was our experience. We tried so hard to get the diagnosis, just to know one way or the other so we could be doing the right thing, whatever that was. We were even questioned, "why does the diagnosis matter, will that change how you look at them?"
Well.....HELL YES. One doctor finally had the guts to look at us and say, "Your kids definately are on the spectrum. Here is the number for a local support group. Here is the book, "Ten Things..." And that moment changed everything. We started understanding the behavior and that also kick-started us to researching what we could do to help them. Just waiting around hoping they "don't have autism" while they lined things up in a alphabetical order and had a meltdown if a letter was missing would not have done us any good.
I don't think our failure to get a diagnosis was a result of any cheapness by the county, just old-fashioned lack of courage to give us the news. Actually, I know this, because the same doc. that didn't give us the label at first DID give the label of Asperger's a year later which opened the door for school services even though (after six months of biomed) we didn't techinically qualify based on the CARS evaluation. She basically said, based on what she had seen before that she knew they needed services.
Posted by: Jack | June 23, 2008 at 08:09 AM
From "across the pond":- Fifteen years ago my 2 1/2 year old daughter was given a provisional diagnosis of autism by our local paediatrician. We were told this wouldn't be formally confirmed until she was five years old because a few children would grow out of the original diagnosis; he commented that no-one knew why this was or which child would "lose" the diagnosis. I must stress that he did what he could to help our daughter. His early retirement was a great loss to the special needs children of our community.
Within the last year our education authority arranged a course (lectures, essays, projects, etc.) for about twenty teachers to help them cope with the ASD children in our ordinary and special needs schools. When I remarked on the number of ASD children (over sixty in a small community) I was told by more than one professional, "those are the ones with the diagnosis", the remark being accompanied either by a significant look or a raised eyebrow.
Kelli Ann, there's an old English saying, "the penny's dropped", meaning that something has suddenly become clear to the person speaking/listening. Even the most stubborn of medical practitioners must be starting to wonder at the high numbers of children presenting with symptoms of autism spectrum disorder. Just think how uncomfortable some of these doctors must be feeling to have their system of belief shaken to the core - vaccination is always a good idea, y'know?
Posted by: ElizaCassandra | June 22, 2008 at 04:36 AM
Hey Kelli Ann:
Great question. But I don't know that this is something new. Salamander is 10 now and when I first had him diagnosed at a little shy of his 6th birthday (he has Asperger's, and has always had 'language', and he was my first child so it took me a while to get my sh#t together and realize something wasn't right), I fell in with a group of moms with kids about the same age as Salamander's and similar presentations, and they ALL had trouble getting a diagnosis for their kids. Granted, these were all 'high functioning' kids..(note I am saying 'high functioning, not 'quirky'.. these kids were NOT quirky, they all had stuff going on that had a significant impact on their daily functioning)
I am no longer on touch with this particular group of moms (let's just say that my approach to helping Salamander and theirs was vastly different - for every dietary intervention I tried for my kiddo, they added another psychotropic med for theirs), but I have heard similar stories of other parents since. And the kids run the gamut on the ASD scale.
So from my perspective, not being able to get a diagnosis is not a new phenomenon.
What is rapidly becoming a new phenomenon here is that, as soon as a child seems to be improving, is that schools are *conning* parents into redoing a 3 year evaluation *ahead of schedule*, and then, when the child *tests as low average* on the various academic tests, it's "bye bye IEP and special ed, as congratulations, your child is now average in academics and average is just fine." I've seen this happen now to several 4 and 5 year olds who had made great strides since they were first given services at the age of 3, and now we have to fight tooth and nail to get these kids the services they still need (which obviously go waaaay beyond just the academics piece).
So I actually see more of a *push* within schools to "undiagnose" the kids than a reluctance amongst the professionals to diagnose (and yes, I know that schools can't diagnose and therefore cannot *undiagnose*, but that's not stopping them from trying).
I am sure the same "drive to reduce the numbers" underlies both trends..
Posted by: Petra | June 21, 2008 at 09:35 PM
Kelli,
Mississippi is notorious for refusal to label children as autistic. This is because of 2 reasons.
a) They don't want to pay for it out of limited school funds (I'm going to get back to that in a moment)
b)They lack both the education and the resources to deal with autistic children.
I lived in Mississippi until about 2 years ago, living right outside of Memphis. My son was diagnosed there, and they tried to label him as learning disabled instead of autistic. The reason why they did this is because they could put him into the public education system and then deny him specialized services. We fought tooth and nail to get his label changed to autistic so that we could force the schools to help him. Finally, about 2 years ago, they told my wife and I that they refused to help him any further and we needed to institutionalize my then 4 year old son. My response? I dropped a very well paying job for a much less paying job and moved to Texas.
Mississippi is one of the states that does not allow conscientious objections for vaccines. They also allowed the casinos into the state so that they could use the proceeds to improve the public education system, which was at that time the lowest public education system in the country. In the 10 years that the casinos were in Ms, the state has gone from number 50 to number 49 in the country for education. The casinos easily top 100 billion dollars a year. It's pretty clear that the polititians are lining their pockets instead of getting these kids the help they need.
Posted by: Craig Willoughby | June 21, 2008 at 09:25 PM
"The same doctor that told me Kale had ASD would not give us an actual diagnosis on paper, he said Kale was too young to label."
Okay all.
I am getting some serious *red flags* over the last week or so after reading about several people who mentioned something about the difficulty of getting an official diagnosis for their child and/or an inability to get them placed in the correct school setting and/or an inability to get an IEP.
Did anyone else catch this?
Question: Since *when* is a child too young to get a diagnosis??? Isn’t that what the entire hullabaloo about increased awareness and early intervention is supposed to be about???
Why do I have an uneasy feeling after reading these accounts?
Could it be that we have so many affected children that officials are finally realizing the full scope of this disaster and feel the only way to stop the flood is to deny it exists by refusing a child the label and/or any of the services associated with it so they aren't picked up and reported in the numbers?
Posted by: Kelli Ann Davis | June 21, 2008 at 07:37 PM